May is PWS Awareness Month.
It’s a time to better understand Prader-Willi syndrome and to see what’s possible.
In this edition of HopeFULL Highlights, three families share what makes their loved ones remarkable, including recent milestones and the moments that keep them moving forward.
Our goal is simple: to show that our kids are more than a diagnosis.
Meet Alayah, 4
Written by her mom, Ida
The early months were full of tears and questions. Alayah needed oxygen, a feeding tube, and surgeries before she ever came home. “I felt like I wasn’t enough,” Ida says. “I was just trying to make it through each day.”
Four years later, everything looks different.
What do you love about being Alayah's mom?
I love her quirks, and how determined she is, she has a strong personality & she is such a leader. I love that she loves things her way even if it times it can be challenging navigating that part. I would choose her to be like in every lifetime.
Tell us about a recent milestone
She ran longer at field day without getting tired. Plus, the school team wants to extend more time in a general education classroom! I am nervous but I know she is a strong girl and she's got this.
What makes you HopeFULL?
I’ve learned how to advocate & how to slow down. How to celebrate progress others might miss, even the small wins
and I know I’ll keep learning along with her.
Meet Declan, 13
Written by his mom, Allison
Declan loves tae kwon do, singing, game shows, swimming, animals (especially dogs!), spending time with family and friends
What do you love about being Declans's mom?
Declan has the most wonderful sense of humor. He works so hard to achieve all he does, and he has the best smile!
Tell us about a recent milestone
When Declan was first born and we learned all about what PWS could mean, any sort of "typical" future seemed so far out of reach. But 13 years down the road, we have had so many typical experiences! Recently, I took Declan to see his favorite YouTubers - he had learned they were touring, and we made it happen! Had a mom and son trip together to another city, and seeing his absolute enjoyment meeting them during the Meet and Greet was priceless. He was laughing and chatting up a storm, and they were equally engaging with him. It was so special!
What makes you HopeFULL?
Seeing so many clinical trials in progress, with promising drugs and therapies! And having our first treatment for hyperphagia, Vykat XR, only 13 years after Declan's birth! Our hope for him to "Live Life Full" is going strong!
Meet Luke, 4
Written by his mom, Hillary
Luke is a fun-loving 4-year-old who adores bubbles, music, being outdoors, his dog Dexter, and gives the very best hugs. He has a huge personality, a curious mind, and a heart that lights up every room.
What do you love about being Luke's mom?
Being Luke’s mom is my greatest gift. He has taught me patience, strength, and how to slow down and truly see the world. Because of him, I strive every day to be a better, more compassionate version of myself.
Tell us about a recent milestone
A recent win has been watching Luke become more independent — taking his own showers, feeding his pup, and telling us what he wants to eat for the day. It’s the little things that make him feel so proud and show us just how much he’s growing.
What makes you HopeFULL?
From the day we received Luke’s diagnosis, I knew our purpose was bigger than just ourselves. Through this journey, we found a community of families and individuals with PWS who need support, hope, and advocacy. We are committed to working toward a cure and helping create fuller, brighter lives.
Why does awareness matter?
Awareness is where it starts. Action is what moves it forward.
Every story shared, every conversation started, every dollar raised helps accelerate research and bring us closer to answers.
Looking for a place to start? FPWR’s Awareness Month Toolkit makes it simple.
